Category Archives: NICU

I talk a lot about Team Sam. Team Sam is headed up by, well Samuel of course, and consists of not only his Dad and I, but all the people who love and care for him – that includes Julia’s House who look after him and his therapists and doctors who oversee his care.

But I must say one massive component in Team Sam, I mean without it we wouldn’t be able to do what we do so easily, is our old faithful NHS.

Hopefully during our lives most of us will only have to rely on the NHS a few times and for only minor things. We, however, are so reliant on the NHS for everything. As a family our biggest financial cost of having Samuel was me having to give up work. When I was pregnant our intention was for me to go back part-time, whether that was for three or four days (we were still negotiating that right up until his arrival). But we soon realised that there was no option and I was to give up work and be his carer.

But wow, Samuel must cost the NHS a pretty penny. Off the top of my head they pay for:

All his medicines (and don’t forget he has quite a few and I have been reliably informed by my local chemist that they aren’t cheap)

Ketogenic formula

Pump equipment and bits and bobs

Gastrostomy care and related bits and bobs

Syringes

Various therapies including hydrotherapy and physiotherapy

Special buggy

Special tumble form seat

Special high chair

EEGs (recording of electrical activity in the brain)

Stuff to test Samuel’s blood ketones and glucose – monitor, lancers and the test strips (one box of 10 ketone strips costs £30 & we use two a day)

Treatment and care when admitted as an inpatient (although Samuel has only been admitted once as an emergency patient since coming out of NICU)

I know I’ve forgotten a number of things but I think you get the idea. Anyway, the fantastic NHS pays for all of that. Its all free. We don’t have to have special medical or health insurance. We just get it all because we live in England. I love the NHS. The NHS has helped our little lad defy the odds.

One of Samuel’s best friends Liam lives in America. They don’t have the NHS like us and his Mum and Dad have to worry about medical and health insurance. I think they may not even be covered for Liam starting the Ketogenic Diet which we can’t even imagine happening here. I must admit that I do feel guilty about how lucky we are and it makes me feel all the more grateful.

So to you NHS here is a massive thank you from Samuel, our family and also all the families in this country who benefit like we do.

And so a message to Mr Cameron. The NHS is vital for children like Samuel and without our free medical care, I can’t even imagine what we’d do and the effect it would have on Samuel. Would it mean that we’d have to make certain choices as to which therapies, or worse, which medicines he could have because we, or our insurance company, would be paying and couldn’t afford (or wouldn’t pay out) for certain things? Would we have to look at cheaper alternatives for some of Samuel’s care and treatment? Hands off our NHS Mr Cameron, I’m warning you.

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This is my second attempt at writing this blog post. I found what I was going to say too hard to write. It was about a dream I’d had. The dream was about Samuel. A fine and healthy Samuel. No ARX. No epilepsy. Just a fine and healthy 19 month old boy doing normal 19 month old things. That first post was going to tell you in detail about the dream. That I went into his room in the morning and there he was smiling at me, asking to be picked up. I watched him eat and enjoy his breakfast, even ask for me. We went to the park and played on the swings. He said Mummy.

It was one of those blog posts that squeezes your heart with every word. But what was the point of me repeating to myself every single acute detail of that dream? It wasn’t true. It wasn’t real. I will never wake up and find this rollercoaster has been a dream. This is real.

I’d be back at work. I wouldn’t get to see my precious boy every single day.

I wouldn’t have the friendship I do with the amazing mums I met in NICU.

I wouldn’t know Julia’s House and just what a fantastic place it is. I wouldn’t appreciate just how full of love it is and I wouldn’t have met all the lovely carers and nurses.

However much I would have loved Samuel, I probably wouldn’t have appreciated him the way I do. I may not have realised just how precious life is and how vulnerable it is.

Samuel has brought out peoples true colours. Although they’ve always been wonderful, my existing friendships, particularly with Sam’s Godmother T, wouldn’t be as they are now. I’ve leant on T. I’ve needed her and she’s delivered. With bells on.

I wouldn’t have made the lovely friendships I’ve got with other local mums of children with disabilities, who are extraordianary strong and just simply brilliant women.

I wouldn’t be person I am now. Samuel has brought out the best in me. I am patient. I am kind. I am compassionate. I can see beyond the condition, the disability, the tubes, machines and scars and see the person that is there.

If I hadn’t found myself in this new world, I may never have opened my twitter account. I may never have started a blog. You wouldn’t know me and Samuel and I wouldn’t know all the absolutely amazing people who I’ve met through twitter and blogs.

Don’t get me wrong, of course I’m not denying that I would not exchange everything I own, every limb of mine, for a miracle. But that isn’t going to happen. So why dwell on the what could have been as it will never be? Just enjoy the here and now and realise how lucky we all are.

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Samuel spent eight weeks in NICU. Eight long weeks. I can’t begin to tell you of the different emotions we felt during that time. Excitement, joy and love and pride at being parents to this beautiful little boy. Fear, pure and utter fear that we may never take him home. We may lose him. Despair. But also we found huge comfort in NICU and the support we received.

It is so difficult to put into words how wonderful the doctors and nurses were. We learned so much from the nurses, we even learned about survival. But all those nurses and doctors were just spectacular. The nurses would regularly pick us up off the floor, dust us down and gave us so much support and comfort we could carry on to see another day.

Our wonderful relationship with Auntie C blossomed while we were there which is something we will always treasure.

We also formed some great friendships with other parents and one particular family has a very special place in our hearts. Leela and Anthony are parents to twins Willow and Stanley who were born 14 weeks early. I’m proud to tell you that Leela and Stanley are raising money for NICU along with the family of Oliver who is also a graduate of NICU. Willow and Stanley and their friend, Oliver, spent a combined 385 days fighting for their little lives in NICU at Poole Hospital. Their journeys were full of ups and downs and quite a rollercoaster ride. For more of an insight into what these babies went through, check out The Early Adventures of Willow and Stanley.

In the summer of 2012, a group of close family and friends will be cycling one mile for each day these three babies endured in hospital. They will start at Windermere in the Lake District on 1 August, finishing (hopefully) 4 days and 385 miles later at Poole Hospital. If you were able to give just a few pounds, your money would go towards buying much-needed equipment to help babies like Samuel, Oliver, Willow and Stanley. You can find out more about their cycle ride and sponsoring them at www.justgiving.com/RollercoasterRide

Even if you don’t want to sponsor the team at the moment, please please watch this beautiful video about Samuel’s very special friends Willow and Stanley. Thank you. x

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A few weeks before we came home from NICU, the nurses let us take Samuel out in the NICU pram for a walk. We didn’t go very far as we were quite nervous but we felt very proud pushing our beautiful baby around the neighbourhood. It was the first time we’d been properly alone with Samuel and it was wonderful.

The NICU 'chav pram' (apologies to any Burberry fans). His little friend is Grannie Bear (named after Grannie who knitted her).

Samuel's cardigan and bobble hat were knitted by Grannie.

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When Samuel was in NICU we would regularly have a nurse called K. I really liked her, she had a great sense of humour (which really helped given the situation) and she was very kind and seemed to be very fond of Sam.

I think we’d been in NICU two or three weeks when the head consultant Dr MK asked us to have a chat with him. He told us that they were becoming increasingly concerned about Samuel’s condition and the fact they were finding his seizures so hard to control. At that point he was on a Midazolam infusion and totally out of it. Dr MK told us that we needed to prepare ourselves for the possibility that Samuel would not come home. Ever. We would either lose him to the seizures or that they would be so impossible to treat he would have to be permanently sedated and remain in hospital indefinitely. As you can imagine our already shaky world crumbled.

My husband got angry. Not at the doctor but at the unfairness of it all. At the women, pregnant women he saw outside the maternity unit in their dressing gowns smoking. We were both very emotional. We went back out to Samuel’s cot and K sat with us for quite a while before telling us her story.

She hesitated at first, I think she was unsure whether it was the right thing to do. But I’m so glad she did. She told us of her baby boy J, who had been born 24 years previously. He had a rare brain disorder, I can’t remember if she told me what it was or whether he had a diagnosis, but she said it was bad. His brain was in a worse situation than Sam’s. He also had a severe cleft palate and in effect was missing his top lip. She was allowed to take him home, but everyone knew it was for ‘family time’ before he passed away. It was almost certain that her boy wouldn’t make it. If I remember correctly, he lived for around 8 months.

As she told me this story I kept staring at her thinking, but how are you here, walking, talking, how have you made it through? But the point is, she did. Her experience led her into nursing, she was a hairdresser when she had J, but after what she went through she wanted to help other babies, so she became a neonatal nurse.

K told us that things we said in the meeting with the doctor, the things that my husband had got angry about, she had said the same things herself all those years ago. She told me that I must not feel guilty, however hard it is, I must not feel guilty. She said that I must always remember that I brought Samuel into this world and whatever happens I will give him a life full of love.

Throughout our time in NICU when things got really bad and I had really dark thoughts I kept reminding myself that K’s been through this and she survived. She somehow made it through and she had worse odds than we did.

The fact that she wanted to help other poorly babies made me admire her even more. I don’t think I’ve got it in me to do that. Being a NICU nurse you see just how damn cruel nature can be. Our friend Auntie C, also a NICU nurse, has told me many stories of children she’s nursed and the different conditions. I don’t think I could deal with that cruelty every day.

When we finally got Samuel home, my husband and I made a deal. That we would truly treasure Samuel. We would enjoy every moment and celebrate the boy he is and try not to mourn the boy he will never be. We made that pact in memory of J.

Although he has surprised the doctors that he’s still here and seems to be doing ok, we know that we will outlive Samuel. He wont make old bones. But we’ve got this far and he is a fighter.

I know there will be parents reading this that have lost their babies. Samuel is 16 months and maybe their little ones didn’t make it that far. But I promise each and every one of you that we hold and squeeze him so tightly every day and know how lucky we are to still have him here with us.

Whatever happens in the future, somehow we will survive. We have to, as Samuel will always be here in our hearts.

Recent ramblings

WHAT DOES THAT MEAN?

NICU – Neonatal Intensive Care Unit (Sam spent 8 weeks there)
MIDAZOLAM – Samuel’s emergency medicine
JULIA’S HOUSE – Hospice which provides respite and play therapy (and lots of cuddles for Sam)
KETOGENIC DIET – Special diet which can help epilepsy
GASTROSTOMY – This is a button put into the stomach and all feeds and medicines can be given through it
CHLORAL HYDRATE – Medicine Samuel has at bedtime to help him sleep
SATURATION MONITOR (SATS MONITOR) – Used to monitor heart rate and oxygen in the blood
NASOGASTRIC TUBE (NG TUBE) – Tube that goes into the nose and down the throat and feeds and medicines can be given through it